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According to the Alzheimer’s Association, more than 6.5 million Americans have Alzheimer’s disease, and one in three seniors will die from the disease or other forms of dementia. There is a growing need for improved care and support, not just for people with dementia but also for their carers.
Underrepresented groups are much more likely to develop Alzheimer’s than other Americans, so clinical trials urgently need to be inclusive of diverse groups.
The Dementia Care (D-CARE) study (2019-2023), conducted at four U.S. clinical trial sites, compared three dementia care approaches. Despite the challenges faced during the COVID-19 pandemic, D-CARE successfully recruited 2,176 racially/ethnically diverse individuals with Alzheimer’s disease or related dementias and their caregivers.
A paper outlining the study’s recruitment strategy and demographic characteristics was published online today in Alzheimer’s Disease and Dementia: Journal of the Alzheimer’s Association.
We hope that lessons learned from D-CARE will guide other researchers in planning pragmatic trials for people with dementia and their caregivers. “
Mia Yang, MD, associate professor of gerontology and geriatric medicine at Wake Forest University School of Medicine and corresponding author
D-CARE is the largest dementia care clinical trial to date and is led by the University of California, Los Angeles. Wake Forest University School of Medicine is responsible for recruiting at four locations, which also include Baylor Scott & White Health in Temple, Texas; Geisinger Medical Center in Danville, Pennsylvania; In addition to Wake Forest University, there are University of Texas Medical Branch at Galveston. The Center for Analytical Sciences at the Yale School of Public Health served as the data coordinating center.
The study compared the effectiveness of three dementia care interventions:
- Health system-based dementia care Includes care provided by the health system’s nurse practitioner or physician assistant dementia care specialists, as well as care from 24-hour on-call providers in addition to routine care.
- community-based dementia care In addition to routine care, nursing consultants are provided at local community agencies.
- Daily care This includes access to the Alzheimer’s Association’s 24-hour helpline and local resources.
Results from the trial are expected to be released later this year, but the current paper outlines the following demographics:
- 80% of participants with dementia were recruited after the onset of the COVID-19 pandemic.
- The average age of people with dementia is 80.6 years. 58.4% were female, 8.8% were Hispanic/Latinx, and 11.9% were Black/African American.
- The average age of nursing staff is 65.2 years old, and 75.8% of them are women. 9.4% were Hispanic/Latinx and 11.6% were Black/African American.
All four clinical trial sites utilize electronic health records (EHRs) and physician/provider referrals as the primary and most effective recruitment strategies to identify eligible participants. Other methods include community partner referrals, social media campaigns, local advertising and adapted Spanish learning materials.
“We also implemented culturally respectful and personalized phone recruitment to families,” Yang said. “On these pre-screening calls, we provide specific references to our partner providers by name.”
Telehealth visits engage more participants from rural areas and from wider geographic areas.
Yang also said the challenges posed by the pandemic have presented opportunities to find innovative ways to reach research participants. While in-person recruitment has ceased, telephone recruitment has increased, which is often more convenient for patients and their caregivers.
“This study reveals the importance of tailoring recruitment to meet family needs,” Yang said. “Our diverse participants will provide valuable insights into how we can better help people with dementia and their caregivers.”
source:
Atrium Health Wake Forest Baptist Church
Journal reference:
Yang, M., et al. (2024) Dementia Care Research (D-CARE): Recruitment strategy and demographic characteristics of participants in a pragmatic randomized trial of dementia care. Alzheimer’s disease and dementia. doi.org/10.1002/alz.13698.
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